This is a question I asked a few times (OK, more than a few times) before my transplant. It's a question that can come up in the observation/pre-op process, too. You have to be willing to accept the transplant and that alll the crap you'll go through will, eventually, be worth it. And some people decide that it's not; they want to 'cash it in,' so to speak.
I can relate to that on some level, because I thought that a few times. When we first began talking about the transplant I was very reluctant, because I was still pretty functional. The problem is, you have to be listed before you really are non-functional, because they can't do the transplant if you're too sick.
And recently, with all the IV crap, I've thought "wow, why did I do this again?" But then I thought about it, and it'll be two years in July. In four months. And that's two years that I am about 99% sure I wouldn't have had if I haven't gotten the transplant. Some great things have happened in that time span, and even the ordinary things take on air of greatness when contrasted with the fact that you might not have been here to enjoy it otherwise.
What brought this to the foreground again? I was reading an article in the Arizona State University paper about two students w/ CF. One was a graduate, and one was a graduate student (I think). The one who had graduated also had a sister with CF, who died two years after a transplant. So she (the student) decided she didn't want to get one because everyone she knew that had one only lived about two years.
Now like I said above, I am sympathetic to this viewpoint. Well, to a point. Because let me tell you, when I started to get really sick, I was glad I was on that list. Knowing that your mortality is nigh makes you really wish it weren't, sometimes. I absolutely wanted that surgery. It was crazy.
And having almost hit the two year mark myself, I can't imagine not living these two years. They were good ones. And I don't know how this girl will feel if she gets worse and has said no to a transplant. Hopefully she'll be content with it. I hope so. Because you have to do what's right for you. But I wouldn't've been able to live with myself if I didn't go for it. I'm not really sure how people can turn down the second chance at life. Because before transplant, "my life was stolen from me...I [was] living a life I had no wish to live." (The Hours--great movie)
Like I said, everyone's different. But something about it just doesn't jive with me. But that's just me.